Look, let me say something pragmatic and hard-hearted

For the last two days, the story of Amelia Rivera has kept showing up in my RSS reader. Amelia Rivera is a three-year-old girl who is developmentally disabled and suffers from Wolf-Hirschhorn syndrome. She needs a kidney transplant to live, and the hospital her parents went to declined to place her on the transplant list and also refused to let a family member donate a kidney to the girl.

The facts are that we have a limited number of donor organs, and any effort to distribute them will be rationing. It falls to us to choose the best way to ration, but there’s no point in trying to reject the idea of choosing. A random lottery scheme for recipients or a first come-first served model is a choice. Right now, one of the ways we choose is prioritizing the patients who are most likely to thrive as the result of a transplant. So, at the very easy end of the spectrum, if your kidneys are failing, but so are your lungs, liver, and pancreas, you’re almost certainly not going on the transplant list.

The important thing to notice is that doctors aren’t making a decision that the person with multiple organ failure isn’t good enough to get to live or that s/he is less human than anybody else. It’s a purely pragmatic decision, like triage in a war zone, to focus resources on the people who will respond best. That can lead to some pretty awful outcomes for individuals. Someone who is homeless may not be considered a good candidate because doctors don’t think they’ll be able to keep up a regular schedule of taking antirejection meds. Someone who has struggled with alcoholism may be turned down for a liver transplant if they haven’t been sober long enough for doctors to believe it will make a difference.

What I haven’t been able to tell by reading the posts about Amelia and her family, is whether bloggers oppose the entire system of apportioning organs by efficacy or whether they don’t think the doctors’ concerns in Amelia’s case are warranted. One of the main concerns cited by doctors according to Amelia’s mother is that, because of her developmental disability, Amelia can’t be responsible for taking anti-rejection medications herself. Obviously, no child could, so the doctors’ concern is that Amelia may not have long-term caregivers who will help her take care of a transplanted organ.

I have NO IDEA how valid this concern is. I don’t know what data exists on long-term medication commitments for people who are medically incompetent. But I can say that, if the data suggests that a sufficiently high people in Amelia’s position aren’t able to sustain their transplant, the doctors are in the right.

I am suspicious that the relevant data may not exist, and I would recommend #TeamAmelia focus some of their efforts there. If the default has just been to not give transplants to developmentally disabled people, Amelia’s supporters should agitate for long term studies to see if the concern is borne out by the data. Otherwise, there is no way to overturn the consensus on risk. Even if historical data exists, it may be prudent to revisit it if the long-term care of the disabled has substantially changed.

There’s another systemic issue to be addressed. I’ve framed the metric for judging the efficacy of a transplant in terms of years of life added, but it’s likely the doctors in this case are considering Disability Adjusted Life Years (DALYs). This is the kind of measure where a year of life in a coma is ranked a less desirable than a year of life out of one, so, all things being equal, you’d give the organ to the person not in a coma. I think this a reasonable thing to take into consideration, up to a point, but we have a responsibility to look at how we calculate and compare DALYs. Again, the point is not to rank how human people are or how much we value them, but to make the best use of the limited resources we have.

If Amelia’s supporters want to start a broader discussion of DALYs and our transplant criteria, I’m all in favor of it, but I think it’s deeply unfair to condemn the doctors and inhuman or cruel when any system will leave some people to die who would passionately prefer to live. (Though, if you want to do something about the scarcity of organs, make sure you’re signed up as a donor and support opt-out donor registries). As long as there’s a scarcity, some people will die; that fact alone is not a rebuke to the allocation system.

Now, one final note about Amelia’s family’s willingness to donate a kidney of their own, and not take one out of the donor registry. Parents love their children and are willing to make a desperate attempt to save their lives even if the risks are large and the prospects are dim. That’s why doctors take the decision out of their hands. No doctor would transplant part of a liver from a mother to her severely alcoholic son, no matter how much she loved him. Again, this comes down to data that I have seen in none of the articles and blogposts on the subject. Links to scientific studies would be relevant here.

Yes, I’m sort of leary of jumping to any conclusions based on the mother’s justifiably emotional rant on her blog. It seems unlikely, too, that it is common practice for CHOP to refuse extreme treatment to children who are mentally disabled and for us not to have heard of the practice until now.

I think the mother has a legitimate gripe about the way this was handled, and I think CHOP should absolutely reassess the way their staff communicates with all parents and especially those of disabled children (chances are the parents are hypersensitive to bias in those cases because they have been treated poorly before).

The mother’s energies are better spent working through an advocate/agency familiar with the territory, with the administrative staff at CHOP, and with a fresh set of doctors going forward. However, she should prepare herself for a similar outcome, better communicated, and outlying all the reasons why a transplant for _this_ child at _this_ time is not medically advisable.

Now, they should probably wait for the social worker in the parking lot and take her kneecaps out with a tire iron, but that’s just me. Sounds like this edjit is in the wrong line of work and needs to be shown the door posthaste, if the mother’s account is even ten percent accurate.

Funny, though, how those who are the first to cry “hard cases make for bad law!” (true, that) are also the first to cry “unfair!” when they don’t get the outcome they desire for their hard case. I totally understand the parents’ reaction, don’t blame them one bit, think they ought to sue CHOP up, down and under for the callous treatment they received, but I’m just not convinced we have the whole picture here.

This case isn’t about having the organ. The family already did have plenty of willing donors from the extended family. The article said that the child didn’t need to be on a waiting list at all.

Also, yes, according to the mother the doctor did only offer that one excuse – that she is “mentally retarded.” It came down to that.

The speculation about who can give her medication was from the social worker, which is baseless considering there is an extended family willing to give up an organ for the child. There are plenty of people to take care of her. It’s not a state matter. It’s a family matter, and the family spoke.

NMH

@Stacey

We don’t know that. We have a dramatic rendition of what the mother says, or believes, happened. Because CHOP is bound by law to remain silent regarding this case, we have no idea if she is either mistaken or outright lying.

We don’t know anything here. We have no facts. We have a fairly sketchy story from a justifiably emotional mother, but there is nothing to indicate that she is not mistaken or not misrepresenting the “facts” in this case.

The child should no more be rejected soley based on her mental capacity than this hospital and medical team should be judged based solely on a frenzy whipped up over the internet.

Let’s wait what the _facts_ are.

Also, a patient may still be ineligible for a transplant even if the family is providing the organ. That’s not the only issue here.

I don’t think “I’m not unquestioningly accepting everything she says” translates directly to “she’s lying.” Any mother in this situation is going to be very emotional. That’s completely understandable, and it doesn’t necessarily mean that anything has been misrepresented. However, if your interest is in the facts and justice rather than the poor baby and her mama, you should probably apply some critical thinking to what mama says.

NMH

I won’t discover the facts because CHOP is not allowed to reveal them.

I didn’t say the mother was lying. You’ve said that here and on your own blog, in spite of the fact I never made that claim. Which would make your assertion that I’m claiming she’s lying, um, a lie.

I’m saying none of us know the whole truth here and that perhaps people should take a breath, is all.

We don’t have the complete picture. We do not have all the facts. Until we have the facts, CHOP deserves the benefit of the doubt every bit as much as this JUSTIFIABLY (as I already mentioned, although you seem to pick and choose the words you want to read, Stacy, and ignore the others, which doesn’t really help the case you’re trying to make for the mother who wrote the blog post) emotional mother does.

Is there some reason Amelia can’t have dialysis? I don’t know how/whether dialysis works with children, but…my stepfather’s been living on dialysis for like two or three years now. He was on the transplant list, but was taken off for some heart problems. That was frustrating to us, but a legitimate reason, and we’ve actually had conversations about this among ourselves and said we’d rather that someone otherwise healthy get a kidney than the precious few we have being wasted on people who are going to die in a couple of years, and their deaths were predicted. “How would I feel,” my stepdad asked himself, “if I found out that I could have had a kidney, say, last year, but instead it went to a guy who drank himself to death six months later?”

So, maybe I’m very desensitized to it, because dialysis is basically a daily part of my life now, but I’m not…really clear on why she apparently needs a kidney to survive. People live for decades without kidneys.

(In the interest of completeness: my stepdad had idiogenic kidney failure when he was in his early thirties (I was six or seven). He had a transplant from his sister that lasted thirteen years (10-15 is the usual life of a transplanted kidney, so he got a good run) before he finally lost all function around 2 or 3 years ago. We do nocturnal home dialysis now, which is a well-established and relatively safe practice, made safer by the fact that I stay up to monitor him and give the necessary medications and wake my mom up if anything is wrong.)

Ahh, meant to add: and once he gets cardiac clearance, he’ll be back on the list, so our reaction to him being taken off is admittedly not as strong as it would likely be if we were just told “never gonna happen.”

Update: I spoke to my mom, who is more knowledgable on it, and yeah, children have been being dialyzed for decades. We can dialyze preemies (that is problematic, but by age 3 we’ve got it down). Amelia can live her entire lifespan just fine on dialysis.

Joe

I believe the mother, who ever talked to her was probably an idiot, or really insensitive probably both. But it doesn’t add up that the Hospital would refuse to do the surgery. If the hospital is so unscrupulous as to discriminate against this child then it seems just as likely that they would do the surgery just for the money. I think there is a huge communication breakdown with this situation.

NMH

Their track record and reputation, too, don’t paint the picture of a hospital that routinely dismisses the mentally challenged based soley on the grounds of their disability.

Rhinestone Suderman

Gosh, yes, Stacy, I don’t know why we would be so silly as to actually believe a mother! Not when we have perky young bloggers, as well as ernest others, to tell us what to think, and who feel strongly about bio ethics!

Moms who feel strongly about their kids—bad!

Being “Pragmatic and hard-hearted”—Good!

Land sakes, all these emotional parents, with their dramatic renditions! When our superiors have all the facts they deem fit for us to know, they will tell us. After all, these poor, emotional people are so distraught, they might not even know the truth anymore! They actually get upset over their kids! Imagine!

They need to be told kindly, and tactfully the same thing that the doctor, and the social worker told them—except, you know, much more nicely, and in a way that will sooth their silly, though understandable feelings, that doctors have much better things to do, than treat their worthless, defective, un-person of a child.

/Yes, the above was sarc.

Honest to God—the creator of Heaven and Earth—what have we become as a people? /This is not sarc.

I would just like to point out that, according to this mother’s report, the general state of the child’s health was not given as the reason for her not receiving a transplant—it was her retardation, and nothing else. They also sent in a doctor whose command of English seems to have been dicey, which seems strange, in such a touchy situation. They also sent in a social worker, who seems to have had a perfect command of the English language, and who didn’t correct anything the doctor said, and who supported him, and who tried to talk the parents into letting their child die. This is bad. Whenever someone comes into the room with a social worker, lawyer or policeman along, they’re trying to intimidate you.

“After all, these poor, emotional people are so distraught, they might not even know the truth anymore!”

I’m sorry, are you trying to say that’s a good thing? Or are you trying to deny that it’s true?

If this is really exactly how it went down, then yes, absolutely, it was inappropriate and discriminatory and the mother has every right to be as angry as she is — if this is really exactly what went down. But, coming from a psych major: human memory just doesn’t work like that even at the best of times, and this kind of stress is really not the best of times. I could change ten words in that exchange and make it much less inflammatory, and there is no way to know who’s closer to the truth between me and that mother (unless there was a tape recorder in the room, because I promise no one else remembers it flawlessly either). No one is accusing the mother of anything or blaming her for anything, but it’s not fair to crucify the doctors either based on one side of an extemely emotional story.

NMH

No one is saying they don’t believe the mother. They’re saying that perhaps the mother, given her distraught state, isn’t herself clear on why her child was rejected as a candidate for transplant surgery.

Also, the cold, hard truth is there have been people in similar situations as this mother who have lied or manipulated the truth.

The only thing we know is we don’t know a lot.

We have one blog post, written as an emotional, dramatic, one-sided rendition of what was said. I’m not saying this woman is lying, but I’m not taking this one blog post as representative of the entire set of facts in this situation. If you actually bothered to read ALL the words I wrote, you’d see that I’m appalled by the callous treatment the mother may have received and I think she should take legal action if it’s true this is how it was handled.

Rhinestone Suderman

We don’t have enough resources to get this child a kidney, or to help everybody who needs a transplant, or serious medical care.

But we have plenty of resources to offer every Kardashian wannabe starlet a pair of fake bazoomas, and botox, to keep the wrinkles away.

Plastic surgery is a big business.

Are our priorities a bit, um—misplaced?

The Vicar

I’m sure we have enough surgeons to perform the necessary transplant surgery on everybody who needs one, but we don’t have enough organs. There aren’t enough donors to provide organs to everyone who needs one. That’s why there’s a waiting list.

As for “serious medical care”, well, there you have a much better argument, but in many cases there is a serious shortage of equipment or trained personnel. Plastic surgery is trivial compared to some of the more serious stuff out there.

NMH

“We” don’t “offer” the Kardashians anything. The Kardashians use their own wealth to purchase what they want. Their priorities are misplaced. Perhaps the doctors who cater to the wealthy and shallow have misplaced priorities, too. But that has nothing to do with Amelia Rivera and CHOP. Totally different issue.

Rhinestone Suderman

Oh, Carly, come off it!

What you’re basically saying is that the mother can’t be trusted, because she was just too emotional, therefore casting her entire story into doubt. You’re not accusing her. . . exactly. You are trying to excuse the doctors, and whitewash whatever happened, by hinting that the mother’s emotional state is causing her to distort her story, hence she can’t be trusted; too “distraught” donchaknow.

No, I’m not. As I said, human memory just isn’t perfect. It has very little to do with her being a distraught mother — she is human. That’s it. Here are my thoughts:

-This little girl is not going to die without a kidney transplant. Dialysis is perfectly workable for a three-year-old and people live on it for decades.
-Putting an adult kidney in a toddler body (especially one that’s already somewhat weak, as Amelia’s is) is incredibly problematic, and while it’s noble of her parents and her extended family to want to help in this way, it’s not realistic.
-Child organs are in HUGE demand, because children shouldn’t receive adult organs and very few children die in such a way as to leave usable organs. Those organs (I keep trying to spell this “orgasns” so forgive me if that shows up) should be given their best chance.
-That doctor is on crack. What the hell is he thinking, talking this way to an angry mother, especially if he was “warned” about her? Why would you speak in any way that could possibly be interpreted this way?
-Denying a transplant based on mental retardation is absurd.
-Denying a transplant to someone with Amelia’s specific diagnosis sucks, but it’s understandable — Wolf-Hircshhorn comes with a short lifespan and a lot of other health problems that would make a transplant problematic.
-Has anyone told Mrs. Rivera about dialysis? Does she even know that she’s not “fighting for Amelia’s life” but actually “fighting for the more convenient treatment?” Would it give her some comfort to know that we’ve been dialyzing children for decades, and that people live for decades on dialysis?

Derek

Rhinestone, I think Carly is merely advocating for a suspension of judgement on our parts. I am inclined to agree with her. I have family members whom I love dearly, but would in an instant paint any person disagreeing with their instincts (on any topic, let alone a matter of life or death) to be bigoted, idiotic, self centered, scum of the earth douche-bags, reality be damned!

Personal experiences, and by extension personal testimonials, are extremely unreliable. Experimental evidence backs this up time and time again. This doesn’t mean that the mother must be wrong, or that the doctors must be right. All it means is that if the only bit of “evidence” we have concerning this situation is a personal testimonial, we should be pretty leery of making our minds up to any great degree. As one of the previous comments so astutely pointed out, the medical professionals should be tight lipped on this matter to protect the privacy of those involved. All Carly is saying (I think) (and I agree) is that we weren’t there, and that it is best to maintain a position of suspended judgement about who is right or wrong in this matter. I think Leah has hit upon a solid idea; this situation should encourage us to discuss the matter of organ transplants in general as it is a serious topic, but to remain leery of making up our minds about the specifics given so few facts available to us.

Rhinestone Suderman

I dunno, Carly—seems to me the doctor this mother talked to should have told her about dialysis, the details of her daughter’s physical state, and alternative, maybe easier treatements—but he didn’t do this. Neither did the social worker, who can’t even plead not having English as her first language as an excuse for miscommunication. They both pretty much told this mom that there was nothing they could, or should, do for her daughter. As for why he talked to her the way he did—well, you’d have to ask him.

In fact, it seems to me that the real object of your indignation ought to be the doctor, the social worker and the hospital, not the family, who can’t be expected to know all the treatments out there, if their hospital doesn’t bother to inform them. Also, as a psych major, I doubt you’re qualified to say what treatments this child does, and doesn’t need (unless you’ve got some background in general medicine, as well.)

When someone comes into the room with a cop, a lawyer or a social worker—they are trying to intimidate you into going along with them.

Having read the mother’s account again, I think there may be some judgment to pass against the doctor (although as Derek put it, far more eloquently than I could, I’d still prefer we suspend this awhile longer). I’m not saying what treatments she does or doesn’t need — for all I know, there’s some other counterindication for dialysis and Amelia really does need a kidney transplant or death. However, not having heard anything of the sort, I don’t feel comfortable assuming that, because I have never heard of a single case where someone medically couldn’t have dialysis. I’m speaking from the perspective of someone who has a pretty intimate understanding of what kidney failure is and how it works and what is and isn’t a consequence of it, because I’ve lived intimately with a chronic kidney patient since mid-childhood, and someone with a pretty solid understanding of developmental delays because I study psychology and because my fiancee suffers from one (she has moderate-functioning Asperger’s, which is comparatively mild, but she has a heavy interest in special needs kids and she tells me about it a lot).

The thing is, something about the story just doesn’t add up for me. On the one hand: no one has mentioned dialysis. On the other hand: the way that mom is fighting, and the fact that the doctor was “warned” about her, suggests a person who is an active participant in her daughter’s treatment. These things suggest a person who is intelligent, informed, and an active participant in her daughter’s treatment. I promise this is possible — there is not a doctor or nurse we’ve regularly seen that doesn’t now defer to my mother on my stepdad’s treatment and what she thinks would work best, because she’s up on the treatments and she knows his case better than the doctor can — what we call a “primary caregiver.”

Taking everything we’ve been presented as fact, we have a mother who is intelligent, informed, and active in her daughter’s health. How could she not know about dialysis? I don’t expect everyone to know every medical option, but I expect a woman who expects to fight and win to know the most common medical options. The logical conclusion is that there’s something we don’t know about the case, and the logical reaction is to suspend judgment.

Also, I disagree with your final statement. Cop? Yes, you’re probably right. Lawyer? Depends on the lawyer, since there are a lot of people who are just mediators, and that doesn’t mean intimidation, but they get called lawyers too. Social worker? In most cases, I disagree. Intimidation is an occasional and unfortunate side effect of what a social worker does, but the point of them is to handle the human element and make judgment calls on how best to deal objectively with a very subjective situation. I think a social worker’s presence is entirely appropriate for a bad-news meeting with a mother who, by her own admission, proceeds to (and apparently has a history to support) immediately melt down and start making accusations.

AshtaraSilunar

“The doctor this mother talked to should have told her about dialysis, the details of her daughter’s physical state, and alternative, maybe easier treatements—but he didn’t do this.”

If you reread the mother’s account, she had already spoken to their regular nephrologist. The doctor in question was part of the transplant team. His duty was ONLY to speak to the family about the transplant process, and in this case, the reasons why the girl was turned down.

If he had been their regular doctor, then yes, he might be at fault, but I really can’t blame him for doing his job. He also pointed out that one of the reasons was that the anti-rejection drugs can cause seizures, and that could be disastrous in a child who already has developmental difficulties.

“Triage” is pretty easily refuted in this case if what the family says is true. They’ve mentioned that their large family must surely have an available donor who would be more than happy to — but no. Even at this point, without even investigating this possibility, they get shot down.

What hasn’t been mentioned is that putting an adult organ in a child body is incredibly problematic and unlikely to work. You don’t undergo a surgery as risky as transplant for what is essentially a hail mary.

Before anyone asks: children can’t be live organ donors. There are profound, long-term complications at that age, and there’s just no way to ethically have a living toddler donate an organ.

Is it wrong? Maybe. Should it be changed? Maybe. But those are the current guidelines. If you disagree with them, work to have them changed, don’t blame the transplant committee that is required to follow those rules.

No one takes ‘just following the rules’ as an excuse for complicity in any genuinely serious discriminatory wrong in any other field of endeavor. It’s one thing to argue that the committee was put in a very difficult position; but trying to neutralize criticism in this way without first considering whether genuinely serious discriminatory wrong was done seems to introduce a serious incoherence in our ability to handle real problems of discrimination.

keddaw

“…my child still does not have the right to live, the right to a transplant, because she is developmentally delayed.”

No-one has the right to live in this sense, we simply have the right not to be killed.

As has been mentioned more information is needed – is this an insurance case or is the state funding it? I would have two very different views depending on which it was. The state has limited resources and should use them to maximise the well-being of the general population, this operation would seem like a misallocation of scarce resources. While I agree with the religious that all life is precious, I don’t believe all life is sacred or equal. (And neither do they or they’d propose reducing the level of healthcare in the US and transferring those resources to 3rd world countries!)

Should it be an insurance case then if the family can find a donor then the operation should go ahead regardless of how long this poor girl may live for or how difficult it may be to keep her on her medication.

As an aside, I am less inclined to believe the mother’s account exactly as told as she did not hear (or remember hearing) the doctor’s opening account. Who knows what he said, there could have been some important details in this part that led to the conclusion that the mental development of the girl meant that she was a low priority for a transplant.

Sure, revisit the transplant criteria, but you’re always going to be left with a basic cost-benefit analysis that values human lives and their relative quality on metrics that will mark down people with developmental problems.

I think part of the issue that you’re missing here is that even when one can come up with a characteristic that statistically predicts how well someone will take care of themselves after a transplant, there are certain characteristics that it is culturally unacceptable to use as determinants to who receives treatment.

So, for instance, even if it was found that people making less than 60k per year in total household income were 30% more likely to forget to take meds and have a negative outcome to their transplants, it would still be considered unacceptable to rule that no one making under 60k gets a transplant. If it were found that certain racial minorities were less likely to stay healthy, take their meds, and make a full recovery, discriminating based on race would still be considered culturally unacceptable.

What people are saying via this protest is that mental disability should be one of the these culturally sacrosanct categories that cannot be discriminated on the basis of, even if there is a rationalistic reason for doing so. Given the pervasive (though quiet) acceptance of eugenic principles in the American medical establishment not so very long ago, I think there’s a pretty good case for holding that this is a cultural third rail which should not be touched — in the same way that race is. It is arguably unreasonable to suggest that the families of the disabled would not take this to be a case of discrimination rather than reason.

keddaw

However distasteful people may find it, the basis for most decisions like this is not the likelihood of the person taking meds nor their likelihood to stay healthy afterwards but longevity and quality of life. In cases like these the quality of life is assumed to be less for someone who is developmentally challenged over an otherwise identical person. Whether that is the case or not may be up for debate, but that’s how it’s currently judged.

That’s as may be, but “quality of life” was also exactly the same argument which was put behind eugenic efforts that were aimed at both the “unfit” and at racial minorities.

Saying that people shouldn’t react as if it’s exactly the same kind of ideology at work is like telling African Americans, “Sure, you went through 300 years of slavery and 100 years of legally enforced segregation, but we got rid of that a few years ago and so will you please just get over it and stop being suspicious of every little slight!”

People just don’t think that way. Treat a group as sub-humans and it gets remembered — perhaps more especially if society refuses to actually acknowledge the way that it was behaving.

In cases like these the quality of life is assumed to be less for someone who is developmentally challenged over an otherwise identical person.

Based on what evidence? The assumption that “I wouldn’t want to be that way, so they must be suffering”? Many developmentally disabled people self-report their quality of life as high.

emily

Don’t you think it’s problematic that the major verbs in your comment are passive? If it’s the case that “it is assumed” and “it’s currently judged,” who is making these assumptions and judgments, and why can’t we (as identifiable actors) challenge them?

keddaw

No, that was entirely intentional as I didn’t want to get into an emotive debate about how a normally functioning individual’s life has a higher societal value than a developmentally challenged person’s.

Feel free to challenge the assumption that Person A’s life is more valuable than Person B’s, but you’d have to go look up on what criteria that judgement is currently made and then argue against those. I will happily take the opposing side.

Thomas R

“That’s why doctors take the decision out of their hands. No doctor would transplant part of a liver from a mother to her severely alcoholic son, no matter how much she loved him.”

I don’t know if you’re Pro-Choice, but if you are I wonder how you square this. If a mother has a right over her body this would seem to include the right to waste part of an organ, if she wishes, provided doing so won’t endanger her own life.

I have some ideas on how you could square it, but it seems potentially confusing at least on the surface.